The HI Global Registry Patient-Powered Research Connecting All HI Stakeholders
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www.higlobalregistry.org
Collaboration of HI Experts Biotech & Healthcare Pharma Caregivers Patients Professionals Advocacy Researchers Family Organizations Members Leads to knowledge, treatments and improved patient care
HIGR STEERING COMMITTEE International Patient Advocates Davelyn Hood, Chair (US) Isabel Calderón, Vice Chair (Canada) Julie Raskin (US) Ulrike Seyfarth (Germany) Maria Paz Oviedo (Paraguay) HI Patient Representative Michelle Walkley (UK) Sarah Dearman (UK) Rianna Sommers (US) Scientific Advisors Jean-Baptiste Arnoux (France) Indi Banerjee (UK) Diva De Le ó n (US) Sian Ellard (UK) Sarah Flanagan (UK) Klaus Mohnike (Germany) Registry Director Pratik Shah (UK) Jacqui Kraska (US) Charles Stanley (US) Paul Thornton (US)
# of SURVEY Type Questions CONTENT Contact Basic contact info and 13 Updatable Information preferences (GRDR-compliant) Key characteristics of the 20 Demographics Updatable participant Pertinent information about Data submitted 13 Pregnancy mother’s pregnancy with once participant Data submitted Pertinent information about 27 Birth once participant’s birth Detailed questions about how the 81 Diagnosis Updatable participant was ultimately diagnosed with HI Medication Current & past HI medication 132 Updatable Management treatment(s) Diet & Feeding Current & past feeding 32 Updatable Management routes and regimens
# of SURVEY Type Questions CONTENT Whether pancreatectomy was Surgical considered, and relevant details if 44 Updatable surgery was performed, including Management glycemic outcomes Commonly related diagnoses noted in the HI community, such as 42 Other Diagnosis Updatable epilepsy, diabetes, pancreatic insufficiency, neurologic and other conditions Glucose Longitudinal – Method and frequency of 26 checking blood sugar levels Monitoring every 6 months Growth & development as well as 22 Developmental Updatable any therapeutic interventions General, physical, social, QOL (Parent/ Longitudinal – 39 emotional wellbeing & school/ LAR) Annual work, healthcare experience General, physical, social, QOL Longitudinal – emotional wellbeing & school/ 42 (Participant) Annual work, healthcare experience, 14+ year old
BENEFITS TO RESEARCHERS/ CLINICIANS Connection with truly global set of HI patients • Broadest compiled set of HI data • Study participation recruitment At least annual reporting: • Natural history of HI • Status of current, global HI management Fertile ground for identifying and even performing future research
BENEFITS TO PATIENTS Better understanding of how the whole community of HI patients is affected by the condition Individualized comparison of participant to the HI patient community Becoming part of the HI community Notification of new clinical studies Patient community driving change De-identified information shared with researchers dedicated to improving treatments and patient outcomes
Study Participants Control Group Treatment Group
Study Participants Control Group Treatment Group
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